Abstracts & Presentations

Conference Program (06/10/19)
Abstracts & Handbook

Friday 11 October 2019
Plenary 1: Improving outcomes - what has been achieved in the treatment of bleeding disorders?
Chair: Dr Liane Khoo
Introduction and current treatments ~ Dr Liane Khoo
Personal Experience ~ Dr Simon McRae and John
Optimising patient care through PK analysis (WAPPS) ~ Prof Alfonso Iorio
Q&A

1045-1215
Concurrent 1
Addressing the challenges of inhibitors
Chair: Megan Walsh
A clinical overview ~ Dr Huyen Tran
Discussion and debate on immune tolerance induction therapy ~ Dr Chris Barnes and Dr Julie Curtin
Personal journey ~ Andrew
Q&A

Concurrent 2
Getting older
Chair: Frankie Mullen
Emerging clinical issues ~ Dr Liane Khoo
Patient voices: quotes from needs assessment ~ Preetha Jayaram
Growing older with your HTC ~ Penny McCarthy
Maintaining independence and keeping up with exercise ~ Greig Blamey
Innovative projects in ageing ~ Marcia Fearn
Q&A

Concurrent 3
Looking after children who have a bleeding disorder
Chair: Robyn Shoemark
Encouraging independence and overcoming barriers to self-infusion ~ Robyn Shoemark
Psychosocial issues for parents and families with a child with a chronic illness ~ Dr Emma Prowse
Transition and personal perspective - Anne Jackson & Patrick
When can I play again? Q&A on physiotherapy issues, joint health and sport ~ Alison Morris and Johanna Newsom
Q&A

1325-1455
Concurrent 1
360° on clinical trials
Chair: Dr Tina Carter
The role of your doctor in a clinical trial ~ Dr Simon Brown
The role of nurses in trials ~ Stephen Mathews
A family’s experience of a clinical trial for children ~ Alicia
An individual’s experience of a clinical trial ~ Hamish
Patient reported outcomes to improve the value of clinical trials in haemophilia (PROBE) ~ Dr Alfonso Iorio
Q&A

Concurrent 2
Reproduction and family planning
Chair: Jaime Chase
Personal Stories
•   Kara
•   Pierrta
A joint presentation on reproduction and family planning
•   A/Prof Kristi Jones ~ Geneticist
•   Lucy Kevin ~ Genetics Counsellor

Concurrent 3
A healthy life for all ages
Chair: Beryl Zeissink
Managing a healthy diet and weight ~ Jules Aitken
Exercising safely at all ages ~ Greig Blamey
Personal experience of managing haemophilia challenges and keeping fit and well ~ Tim
Q&A

Plenary 2 – Dr Happy (Dr Tim Sharp) presentation
Chair: Dan Credazzi
Dr Tim Sharp is Australia’s very own ‘Dr Happy’, at the forefront of the positive psychology movement as founder of The Happiness Institute.

Saturday 12 October 2019
Plenary 3 Musculoskeletal challenges: joint care and treatment
Chair: Abi Polus
The importance of upper limb care throughout life ~ Greig Blamey
The Utility of Ultrasound in the evaluation and management of Haemophilic Arthritis ~ Dr Rob Russo
Surgical options ~ Dr Mark Horsley

1045-1215
Concurrent 1
Gene therapy de-mystified
Chair: Dr Susan Russell
The basic science of blood clotting and how this interacts with new therapies ~ Dr Yvonne Brennan
Through the Looking Glass into the World of Gene Therapy and Non-Factor Therapies ~ Dr Julie Curtin

Concurrent 2
From girls to women
Chair: Susan Dalkie
Personal story: self-management, diaries, what a parent wants to know ~ Shauna
Female Factors - issues for different life stages and how to handle them ~ Dr Jenny Curnow
The Gynaecologist and Patients with Bleeding Disorders ~ Dr Kim Mathews
Carriers: What do parents, young girls and women need to know? ~ Joanna McCosker
Q&A

Concurrent 3
Self-advocacy
Chair: Loretta Riley
An interactive workshop:
successful self-advocacy; identifying relevant skills and resources; barriers and overcoming them.
Session to be facilitated by Loretta Riley with Dr Liane Khoo, Nicoletta Crollini and Jane Portnoy

1325-1455
Concurrent 1
Von Willebrand disease and rare bleeding disorders
Chair: Dr Ritam Prasad
Current issues and VWD - best practice and future treatment ~ Dr Ritam Prasad
Developing an effective treatment plan ~ Alex Connolly
Personal experience of living with VWD and being a parent of a child with VWD ~ Susie
The rare bleeding disorders ~ Dr Heather Tapp
Personal experiences of living with a rare factor deficiency ~
Belinda
Q&A

Concurrent 2
Youth
Chair: Dr Moana Harlen
What’s the risk?
Panel discussion of scenarios, with audience input (Q&A style) - personal decision-making around visiting HTC for a bleed review; gym/sport-related injury; travel, insurance; disclosing – in sport, in relationships; work, challenges of becoming an adult.

Panel:
•   Young people with bleeding disorders ~ Alan and Sabrina
•   Older person with haemophilia and parent ~ Paul and Shane
•   Health professionals ~
•   Greig Blamey, Physiotherapist
•   Jane Portnoy, Psychosocial worker
•   Steve Matthews, Haemophilia Nurse

Concurrent 3
What is comprehensive Care today?
Chair: Anne Jackson
Navigating Health Care and Other Systems ~ Loretta Riley
Oral Health and Dental Management of Patients with Bleeding Disorders ~ Dr Suma Sumakura
Queensland Haemophilia Centre’s experience of Telehealth – engaging with the rural, remote and regional inherited bleeding disorders community ~ Loretta Riley, Amy Finlayson and Dr Jane Mason

Plenary 4
New opportunities or is the status quo good enough?
Chair: Dr Liane Khoo
What patients want to achieve from treatment – impact of new treatment to a person’s life. From a parent’s point of view ~ Claude Damiani
New Therapies for haemophilia: can we achieve new goals? ~ Prof Alfonso Iorio
Nurse – nursing into the future ~ Robyn Shoemark
What’s involved with getting cutting edge treatment to Australia - understanding and reducing barriers to access ~ Dr Simon McRae
Panel Discussion

Date last reviewed: 31 October 2019